A photo of me wearing a portable electroencephalogram (EEG) after my breakthrough seizures in 2011

A photo of me wearing a portable electroencephalogram (EEG) after my breakthrough seizures in 2011

In 2006, a journalist in Norfolk, Virginia (me) was on assignment to interview an entrepreneur who ran a charity to support families with a history of abuse. She was there with her husband, a Norfolk lawyer.

The interview took place at the Town Point Club, a members-only venue that caters to rich people. Where prices are not listed on menus and men are required to wear suit jackets to enter.

Well, this here working-class journalist would shake that all up, literally. In line at a buffet, I couldn’t tell you what happened next. Because I don’t remember.

I woke up staring at a metal ceiling with no idea what was going on. Shocked and scared, I looked around frightened, with my head strapped down and my arms tied to metal railings. My first impression was: “kidnapping”. But it was also daylight, and this would seem brazen for a rich couple in the middle of a downtown with a police precinct nearby. The woman I just interviewed placed her hand on my shoulder and said: “It’s going to be all right. You’re going to be OK.”

 

My piece “Coming To Terms” was created in Studio E and retells the story of my first seizure

My piece “Coming To Terms” was created in Studio E and retells the story of my first seizure

I was in an ambulance, and spent the next three days in the hospital. It took a second time two years later to diagnose both as tonic-clonic seizures. After a third time in 2009, I was diagnosed with epilepsy.

 

Presenting my piece “Valentine And Dymphna: Saints vs. Seizures” at the 2015 American Epilepsy Society conference in Philadelphia

Presenting my piece “Valentine And Dymphna: Saints vs. Seizures” at the 2015 American Epilepsy Society conference in Philadelphia

It was a puzzle to talk about it for the first time. How can I explain this to people I care about when they never heard about it before?

I hated the first medication. I think it hated me back. Eventually I found one that worked, but in 2011, the seizures came back. And I was so angry and confused. I thought it was in the past. That I didn’t have to worry about it anymore.

It was then that I understood what I was up against. Epilepsy is like trying to outrun something that doesn’t have to chase you. It’s an internal earthquake that you don’t remember and takes away little pieces of your life.

I learned over time, and as I have to remind myself, you don’t have to let it win. My longtime friend Lisa said it better than I ever could have. “Who’d a thunk it all those years ago that you would have such a frightening interruption come crashing into your life, only to have it followed by a precious gift.”

Today, I don’t fear epilepsy. It is a stress, and having to be on medication almost every day for the last 10 years is annoying. But I can’t say it’s been all bad. I learned how to turn the worst days of my life into the brightest colors from my heart.

My piece, “What Awaits In The Neurostellar?” (lower right corner) at the 2016 Hidden Truths: The Mind Unraveled exhibition in Newport Beach, California

My piece, “What Awaits In The Neurostellar?” (lower right corner) at the 2016 Hidden Truths: The Mind Unraveled exhibition in Newport Beach, California

In 2013, I participated in my first Studio E art therapy sessions in Washington, D.C. This program is intended for people with epilepsy. Since then, I have been able to travel from the Atlantic to the Pacific with my art.

We, and all those who found comfort in places we never thought to look, show that we don’t stay down after we fall down. We will get back up until it is time to be called home.

We will be miserable in our shaking, but we will find comfort from strangers and our loved ones.
It takes the ones who say “we still love you”, the ones who don’t condemn us in front of a child.

The ones who listen, the ones who don’t understand your emotional pendulum but hold on anyway, and the ones who don’t care what happened…they just want to know if you’re OK.
In other words, it takes the ability to find God’s love out of loneliness.